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Monday, 14 August 2017

MadeUpMilestones: Picnic blanket with @happylittlehugh

It's time for another #madeupmilestones guest post, where I get the privilege of sharing a special moment for someone. And today, it's from Little Mama Murphy about a few seconds of magic as in on a picnic blanket and captured on camera.1. Who has achieved their #madeupmilestone? Tell us a bit about them

My youngest son Hugh is 7 years old. He is a wonderfully happy boy, who finds absolute delight in the simplest of things. He has an undiagnosed genetic condition, otherwise known as a Syndrome Without a Name (SWAN) which has caused him to have complex health needs and profound and multiple learning difficulties.

2. When and where did the #madeupmilestone happen?

Having a child with such complex needs is ridiculously expensive. We’re currently in the process of adapting the house to make it more accessible for Hugh – he is in a wheelchair and unable to sit or walk independently.

Prior to our adaptions, Hugh was only able to get into his bedroom, the bathroom and the living room. We couldn’t take him outside because of the small doorways and steps and he was unable to get into the kitchen. We’re making everything open plan and on one level so that his whole house is open to him. We’ve got some amazing friends who held a huge fundraising event, last weekend, to help us achieve our goal of making the house suitable for Hugh. It was a big family fun day with a five-a-side football tournament, bouncy castles, a raffle, food and a DJ. All our family and friends turned out to support it.

3. The fab part... what happened?

Hugh doesn’t like coming out of his wheelchair in new environments, he can get anxious and upset. We’d brought a picnic blanket with us, to sit on and watch the football matches – Hugh’s daddy, his uncles and a lot of our friends were playing. Hugh’s carer from school had come along too and offered to get Hugh out onto the picnic blanket while I mingled.

To be honest, I assumed he’d cry. Instead, he was quite chilled out, listening to the noises of the people around him and enjoying the breeze on his face. Earlier in the week, he’d been given a new lycra suit. It’s to help improve his core stability – Hugh has hypotonia, or low muscle tone to you and me. As such he is unable to sit up by himself.

However, on Saturday, with the help of the new lycra suit and a bit of encouragement to place his hand on the ground, Hugh managed to sit up completely unsupported. It was only a few seconds – maybe 15 at most, but he did it! We were all delighted with him. Of course, once we started congratulating him, Hugh just laughed and fell backwards, point blank refusing to do it again! But he’s shown us he can do it once and that the potential is there which is just fabulous.

2 comments:

oh how wonderful is this? You must be so thrilled with his progress! I guess its similar to all milestones in the fact that they do it once and then months later they do it more frequently and for longer and then it becomes second nature to them!Thank you for sharing this with us at #TriumphantTales. I hope to see you back on Tuesday

What is Autism?It's so much I couldn't possibly try and explain. For us it's wonderful and heart-breaking. Joyous and truthful. But as far as diagnosis is concerned, why not have a look at the National Autistic Society for their definition of Autism.

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